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- Convenors:
-
Delia Da Mosto
(King's College London, London)
Cristian Montenegro (King's College London)
Giulia Pollice (University of Modena and Reggio Emilia)
Martín Correa Urquiza (Universitat Rovira i Virgili)
Luca Negrogno (Città Metropolitana di Bologna, Università di Bologna)
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- Formats:
- Panel
Short Abstract
The panel asks how experiential knowledge reshapes mental health across polarised contexts. How can such knowledge gain authority within mental health services, academia and social movements? How is it negotiated, co-opted, or resisted? How can it foster collectivity or deepen divides?
Long Abstract
Since the 1950s, survivor/user movements have mobilised lived experience to expose injustice and objectification, co-produce new forms of care, and redefine what counts as valid knowledge alongside – and often against – biomedical psychiatry. Today, experiential knowledge has gained new visibility across the mental health field, taking diverse forms: as refusal and pride within mad movements; as peer support in community mental health; and as a “voice” and “evidence” within research and policy arenas; as a form of epistemic resistance and counter-hegemonic practices; and as negotiation with biomedical logics of diagnosis in clinical settings.
However, the inclusion of lived experience within institutional settings can be fragile. Participation is flattened to tidy recovery narratives, roles become tokenised or precarious, and concepts forged through struggle are translated into individualising, market-friendly idioms of resilience, wellness, and self-management, as biomedical metrics privilege standardised “progress” over situated accounts.
Nevertheless, the lived experience fosters the coexistence of positions that do not agree on ends or methods yet recognise themselves as fighting together against epistemic injustice, harmful practices, and extractive forms of care.
Polarisation, in this context, doesn't involve clear belligerent sides, but professional realignments, coalitions and new tensions between forms of evidence. How can lived experience drive change across services, academia, and social movements, and what is our role within that process?
We invite papers that follow and/or embody experiential knowledge across disparate positions and infrastructures, such as Mad Pride spaces, peer-led services, clinical systems, legal and policy arenas, media and digital platforms, and faith-based or community settings. Methods may include collaborative and multi-sited ethnography, survivor-led, arts-based and participatory action research, as well as practice-based reflections from peer work and community mental health.
Accepted papers
Session 1Paper short abstract
This paper argues that sociology’s value in health research lies not in amplifying lived experience but in analysing the social structures that shape it. Drawing on Luhmann, it shows how incongruence between engagement and sociology enables critical, generative dialogue.
Paper long abstract
This paper explores the distinctive contribution of sociology in the evolving landscape of participatory and experience-centred health research. It argues that sociology’s value lies not in amplifying experiential accounts, but in analysing the social structures and norms that shape them—a contribution that can be obscured by the assumed alignment between qualitative research and engaged health agendas.
Drawing on a recently published article (Engagement and qualitative sociology in health research: proximal, but incongruent, Montenegro & Green, 2025), the paper challenges the notion that qualitative social science and experiential knowledge are naturally allied. While both respond to the limitations of biomedical reductionism, they occupy distinct epistemic positions. Using Niklas Luhmann’s concept of second-order observation, the paper situates this misalignment as a space for generative tension rather than an impase.
The analysis highlights how alignment narratives are shaped by three developments: user-led struggles for recognition, the social sciences’ critique of biomedical dominance, and the institutionalisation of patient engagement in research. Rather than erasing this incongruence, the paper argues for recognising its productive potential. Through sociological analysis, experiential accounts are placed within wider systems of meaning, power, and institutional change.
In a context where lived experience is increasingly mobilised across polarised and unequal settings, the paper calls for a reflexive sociology that does not simply participate in engagement efforts, but interrogates the conditions under which certain voices become visible, legitimate, or useful. This opens space for collaboration without mimicry, and for critique without detachment.
Paper short abstract
Recovery Colleges are educational models structured around co-production between mental health professionals and experts by lived experience. Through ethnographic research, this paper asks what idea of health is enacted through RC activities and how its lexicon shapes participants' experiences.
Paper long abstract
Recovery Colleges emerged in England around 2009 as an educational model in mental health grounded in personal recovery and structured around co-production between mental health professionals and experts by lived experience. Since then, Recovery Colleges have travelled internationally, including to Italy, where they are often presented as pragmatic infrastructures for participation, empowerment, and cultural change within services and organizations.
This paper draws on ongoing ethnographic research and active participation as a volunteer in a Recovery College in Northern Italy. Using participant observation and ethnographic interviews with participants (peer experts, family members and professionals), I ask what idea of “health” is enacted through Recovery College activities and what kinds of experience become legible—and authoritative—within this setting. My intention is to follow how experiential knowledge is assembled across mundane organisational practices, especially focusing on the informal “back-office” work that makes the courses possible. I focus on the lexicons that circulate behind and during the Recover College courses, drawn by WHO-oriented materials, recovery language, and biopsychosocial notions of illness—and on how they shape the translation of lived experience into teachable content. I examine the tensions that arise when experiential accounts are invited as “evidence” while simultaneously encouraged to fit tidy narratives that are compatible with institutional metrics. The paper contributes to debates on how experiential knowledge is negotiated, co-opted, and resisted within polarised mental health fields—and what is at stake when “recovery” becomes both a promise of change and a regulatory grammar.
Paper short abstract
Drawing on ethnographic fieldwork in Dutch training programs, sites in which struggles around experiential knowledge manifest, this paper follows how aspiring experts by experience learn to make lived experience legible as experiential knowledge.
Paper long abstract
Experts by experience are imagined as capable of building intimate and horizontal relations, especially with people deemed “hard-to-reach” or “care-avoidant.” In Dutch mental health care and welfare landscapes, experiential expertise has become increasingly central, bringing about a proliferation of training programs for aspiring experts by experience. In these training programs, lived experience – imagined to be outside the domain of professionalism and institutions – is transformed into experiential expertise that can be employed in the role of expert by experience.
To better understand how experiential knowledge gains authority and reshapes mental health care and welfare, we need more insight into its production. Drawing on ethnographic fieldwork in training programs for aspiring experts by experience, I analyze the production of experiential knowledge. Training programs are sites where struggles and tensions around the role and promises of experiential knowledge coalesce. How do aspiring experts by experience learn to be the harbinger of institutional change, as well as an efficient broker between “life world” and “system world”? How are tensions between the desire to acknowledge authentic, individual experience as a source of knowledge, and the desire to standardize the role of expert by experience as an institutional identity negotiated? And how do participants both learn to liberate themselves from pathologizing labels, while taking on an institutional identity reliant on labels? While reframing their experiences in new scripts, and learning how to relate to those they work with, I show how aspiring experts by experience navigate these tensions in the production of experiential knowledge.
Paper short abstract
This paper examines Spain's "Mad Movement" and its claims to epistemic authority. Using epistemic injustice and labeling theories, I analyze how the movement operates as counter-hegemonic strategy and axis of relational restructuring that challenges psychiatric hegemony.
Paper long abstract
This comunication examines the emergence of the Mad Movement (Movimiento Loco) in Spain within struggles for recognition of difference. Based on ethnographic engagement and analysis of activist discourse, I explore how this movement constitutes a space of convergence for individuals and collectives who have experienced psychiatrization.
Drawing on Miranda Fricker's concept of "epistemic injustice" and labeling theory, I argue that the violence experienced by psychiatrized individuals—both testimonial and hermeneutical—serves as the movement's point of origin. Psychiatric diagnosis operates as a colonizing force over subjectivity, systematically silencing alternative understandings of psychic suffering beyond biomedical frameworks. The Mad Movement emerges as a counter-hegemonic response, creating liminal spaces where individuals can re-subjectivize beyond diagnostic capture.
A central tension concerns the use of madness as an axis of identification. Through analysis of Mad Pride celebrations, activist discourse, and community radio narratives, I demonstrate that the Movement neither defends mad essentialism nor proposes closed definitions of madness. Rather, madness functions as an operational category constructed through articulating oneself as a subject of rights, confronting expert knowledge that has historically foreclosed this possibility.
I argue the struggle centers on relational restructuring rather than identity affirmation, advancing relational autonomy that challenges individualistic conceptions of selfhood. The Movement demands recognition not of a supposed mad condition, but of the right to participate in defining problems and solutions beyond biomedical frameworks, while acknowledging interdependence and vulnerability as constitutive of human existence. This includes advocating for social acceptance of diversity, legitimacy of vulnerability, and epistemic authority of lived experience.
Paper short abstract
How do people negotiate support in Discord peer-led mental health communities? Drawing on digital ethnography, this study shows how channels, roles, and rules organise disclosure and response, turning lived experience into practices of responding to distress shaped by responsibility and risk.
Paper long abstract
Online mental health peer-support communities are often evaluated as either beneficial or harmful, yet such debates rarely examine how people actually attempt to support one another in everyday practice. This paper analyses mental health peer-support groups on Discord as infrastructures of sharing: configurations of channels, rules, roles, and technical systems through which people disclose distress, respond to others, and negotiate practices of support.
Drawing on 12 months of digital ethnography across six communities and interviews with members and moderators (n=20), I use abductive thematic analysis to trace how these arrangements shape peer support. Three mechanisms recur. First, separate channels (for example, general chat, ‘vent’, memes) create parallel publics with distinct visibility and response norms, sustaining ‘third-place’ sociality alongside support and allowing different forms of interaction to coexist. Second, role systems script support work: formalised roles (member, listener, moderator) assign response styles and obligations, turning personal experience into a recognised resource while distributing labour and accountability unevenly. Third, rules, technical settings, and moderation practices govern contact, defining who can interact, under what conditions, and how communities intervene in crisis situations such as harassment and self-harm disclosures.
Rather than treating peer support as a singular intervention, the paper argues that these infrastructures organise lived experience into everyday practices of support, negotiation, and risk, helping to explain why evaluations of online peer support often diverge. It contributes to anthropological discussions on peer care, experiential knowledge, and mental health in platformised environments.
Paper short abstract
Drawing on action-research in Northern Italy, this paper analyses the introduction of experts by experience in mental health services. Exposing polarisation around authority, care and legitimacy, the paper shows how transformation can be supported through tensions rather than shared agreements.
Paper long abstract
The role of peer support workers and people with lived experience (PLEs) has gained increasing recognition within mental health services. This has led many systems to actively implement PLEs as part of recovery-oriented initiatives. However, this has been accompanied by critical concerns regarding the co-optation of experiential knowledge towards biomedical and managerial logics.
This paper draws on an action-research project that aimed to support the implementation of PLE roles within public mental health services in Udine, Italy. Established through a robust partnership between health authorities, service users and associations, the project sought to initiate a novel role and service model, whilst examining the epistemic and cultural practices of mental health services.
Rather than glossing over frictions as “implementation problems”, this paper focuses on the most challenging issues that arose: uncertain role boundaries and remuneration, disputes over legitimacy and accountability, concerns about tokenisation, and shifting alliances. We highlight how the project navigated these tensions by starting with the creation of dedicated, separate spaces where service users and family members could develop a shared language and political consciousness that transcended individualised recovery narratives, and where professionals express their doubts and limitations. Through facilitated moments of exchange between these spaces, tensions became apparent, enabling provisional 'fits' to be negotiated between competing moral economies of care, authority and knowledge. By addressing these fractures, the project highlights the ethical responsibility of researchers and practitioners to recognise conflict as an integral part of transforming care.
Paper short abstract
This paper explores how collaborative narrative practices produce experiential knowledge in polarised mental health contexts. Based on ethnography in a therapeutic community in Portugal, it examines how lived experience negotiates authority, care, and conflict across institutional boundaries.
Paper long abstract
This paper examines how experiential knowledge is produced, negotiated, and gains authority within polarised mental health worlds. Drawing on collaborative ethnographic research conducted in a therapeutic community in Portugal, it explores tensions between institutionalised disciplinary discourses centred on abstinence, moral responsibility, and standardised recovery, and residents’ lived experiences of care, suffering, belonging, and moral uncertainty. Photography and digital storytelling workshops were developed as collaborative, arts-based spaces for ethnographic experimentation. Rather than eliciting linear or normative recovery narratives, these practices enabled participants to articulate situated accounts that diverged from biomedical and institutional logics of illness and treatment. The resulting multimodal narratives foregrounded memories, affects, social bonds, ambiguities, and ethical dilemmas often marginalised within therapeutic protocols and evaluative metrics. I argue that these collaborative practices function simultaneously as research methods and as forms of care. They generate experiential knowledge that does not simply oppose biomedical frameworks but exists in tension with them, negotiating legitimacy, recognition, and authority within institutional settings. The paper shows how narrative, image, and collective reflection operate as everyday strategies of resistance and re-existence, allowing conflict to be held rather than resolved. By tracing how experiential knowledge circulates within and beyond the therapeutic community, the paper demonstrates how lived experience can foster fragile forms of collectivity across divergent positions, while remaining vulnerable to moralisation, co-optation, and epistemic flattening. It shows how collaborative, arts-based ethnography illuminates the coexistence of care and conflict, and how experiential knowledge can reconfigure moral, affective, and institutional boundaries in polarised mental health contexts.
Paper short abstract
This paper examines how residents and staff produce contested knowledges of care in a psychiatric halfway home in India. While gratitude and ethical care are publicly performed, secrecy and coercion shape everyday life, revealing lived experience as survival rather than reform.
Paper long abstract
Halfway homes are widely framed as humane, community-based alternatives to long-term psychiatric hospitalisation, positioned as spaces of recovery, autonomy, and reintegration. Despite these ideals, ethnographic fieldwork in a psychiatric halfway home in India revealed everyday care organised through disciplinary routines, constant surveillance, and coercive practices.
Drawing on ten in-depth interviews with residents and staff members alongside sustained participant observation, this paper examines how different forms of experiential knowledge about care are performed and negotiated within the institution. Residents publicly enacted rescue narratives expressing gratitude toward the halfway home in the presence of external donors and observers, emphasising being “saved,” and admitting that they did not desire structural change. Yet away from surveillance, they engaged in shared repertoires of secrecy, selective disclosure, coded communication, strategic compliance, and mutual warning to navigate coercion and protect one another from punishment.
In contrast, staff members articulated ethical commitments to dignity and therapeutic responsibility while simultaneously engaging in surveillance, moral policing, and coercion. While staff knowledge shaped institutional routines and care decisions, residents’ experiential knowledge remained institutionally invisible.
I argue that residents' lived experience in the halfway home does not primarily function as resistance or a reformist voice but becomes a practical tool of survival in the face of coercion. By foregrounding how residents' experiential knowledge contests the institutional power sustained through staff members' everyday practices, the paper raises critical questions about whose knowledge is recognised as legitimate in contemporary mental health care.
Paper short abstract
“Mann udaas hai” explores how Bhil women’s experiential knowledge of distress circulates through idioms, silence, and everyday care, holding local authority yet losing recognition within institutional mental health systems, revealing epistemic polarisation grounded in unequal regimes of evidence.
Paper long abstract
This paper examines how experiential knowledge of mental distress is produced, circulated, and constrained within polarised mental health landscapes through an ethnographic study of Bhil women in southern Rajasthan, India. Drawing on extended fieldwork, it explores how women articulate emotional strain through locally grounded idioms such as mann udaas hai (the heart feels low), bojh (burden), and “tension,” rather than through psychiatric categories.
These idioms constitute forms of experiential knowledge that carry authority within kinship networks, ritual practices, and everyday labouring lives. Women recognise distress through embodied signs, silences, humour, and shared work, and respond through relational forms of care involving family, ritual healers, and informal women’s networks. Yet this knowledge rarely gains legitimacy within biomedical mental health services, where distress must be translated into diagnostic categories, individualised symptoms, or measurable outcomes to be recognised as valid evidence.
The paper argues that this gap reflects epistemic polarisation between situated, relational ways of knowing and institutional mental health frameworks that privilege standardisation and visibility. As women’s experiences move or fail to move across infrastructures of care, silence is misread as absence, endurance as resilience, and collective coping as individual adjustment. By following experiential knowledge across community, ritual, and clinical domains, the paper highlights how unequal regimes of recognition shape mental health care and deepen epistemic exclusion.